Who is a good candidate for Neurontin?

[Sarahsmom46]

Happy Friday Everyone,

Wonko shared her wonderful experiences with using Neurontin and it got me to thinking if this would be something that can work for me too.  I am still very new to this forum so I don't know a single thing about what helps and what doesn't with pain,  but from reading the many posts I see that so many of you are on it or have been on it.  
\
What pain does it help exactly?  Does its effectiveness wear off after awhile like many other drugs?  When is the right time to start taking it?  How do I ask my neurologist for it and not sound like I've been watching too many commercials on TV?  I have painful burning and pins and needles in feet and toes and pain with heaviness in my legs all the time - day and night.  The worst time is at night, however, even waking me 2-3 times.  I didn't know there was anything to do about it other than taking percocet or darvoset or whatever it was they gave me in the hospital.  Since being discharge they only gave me 800mg of Motrin for pain and that isn't helping me at all.  I thought this pain was just something I would have to learn to live with.  If there's something out there that can help me, then I am all for trying it.  Thanks you guys.

Julie (Sarahsmom46)

[Sarahsmom46]

This is all such encouraging news for me.  It's like a "light at the end of the tunnel" feeling.  I am willing to try what you have all suggested and if one thing doesn't work then I will try something else. Looks like we all will be keeping an eye out for PainDoc's to see what info we can get on nerve pain management when he/she is available to address this daily challenge.  What a wonderful resource you all are and I sincerely appreciate it.  Thanks again!!!!

Julie

[essdipity]

Thanks for this post. I think it's a great overview of what we have in terms of pain meds. I've been fortunate to get good relief without experimenting too much, and also I have a great prescription drug plan, which helps so much.

For me Lyrica has been a godsend. But Lyrica in combo with a small dose of amitriptyline has been even better. These are not for everyone, and this is not meant as a commerical for anything. What I AM advocating is persisting in finding relief from MS pain. No one should just suffer, from pain, spasticity, sleeplessness or whatever else MS causes. Sometimes we try to tough it out, and only wind up being exhausted as well as badly hurting. So I urge everyone to speak up and talk to your doctors about prescription as well as OTC help. It doesn't matter if you have no diagnosis, you still have pain. If one thing doesn't work, try another.

Don't worry about making a diagnosis more difficult through taking meds. A decent neuro can sort this out.

I do look forward to more from PainDoc. I particularly want to know whether the efficacy of a particular med can confirm the source of the pain. For instance, if Lyrica works, does that mean the pain is neuropathic, and so on.

ess

[Quixotic1]

Hi, you've asked a great question.  Paindoc promised us a writeup on treating nerve pain and severe paresthesias, but he hasn't been around lately.  I'll try to contct him.

Treating nerve pain and paresthesias is something of a guessing game.  It is hard to predict what patients will respond how to each med.  It is a system of trial and error.  Typically they start with the "tried and true" meds and work from there.  It is well known that traditional pain relievers like acetaminophen and ibuprofen are next to useless.  Even the narcotics are pretty ineffective.

There are three that seem to get prescribed the most.  These are all originally anti-seizure meds.  It makes sense.  A seizure is a big nerve discharge in the brain that shouldn't happen.  The nerves just spaz out.  A paresthesia is similar.  A set of nerves starts sending a signal that they shouldn't send.  They also "spaz out."

One of the oldest nerve pain meds is carbamezepine (brand name Tegretol).  It can be very useful for many kinds of nerve pain.  It is especially known for one of the most painful of all, called Trigeminal Neuralgia (neuralgia = nerve pain).  This is a condition in which the nerve that brings back sensation signals from the face to the brain is damaged and sends excrutiating pain signals back.  The first line drug  to try is carbamazepine.  I used it for TN and it was VERY effective.

Gabapentin (Neurontin) was one of the next meds tried and found to be useful.  It has a wide range of dosing and is often very effective.  However, some people feel too weird on it and can't tolerate it.  Sometimes the doctor tries to start at too high a dose, dooming the trial to failure.

One of the most common - because of a huge multimedia marketing campaign and because it was recently approved to treat the neuropathic pain of Fibromyalgia - is pregabalin (Lyrica).  It has some similarities to Neurontin, but is also very effective and very expensive.  Some people do extremely well on it and others can't tolerate it.

Then there is a huge list of meds that are similar (originally seizure meds) that can be tried but there is less experience and testing behind them for neuropathic pain.

Often the pain managment docs try mixed therapy.  Many of the pain meds work so well together that lower doses of each are more effective together.  I don't know much about combination therapy, with one exception.  When monotherapy (one drug) is not working, and one of the main problems is that the pain or paresthesia is keeping someone awake at night, they may try adding in Amitriptyline.  This is an old time antidepressant in the category of "Tricyclic AntiDepressants."  It's main drawback is that it causes sedation.  But, added in a small dose at night, it affords very good additional pain relief and helps the person sleep.

Also, many of the other antidepressants can be very effective in treating chronic pain - both regular pain and neuropathic pain.  I am not well versed in these.

So, Julie, you should definitely ask you doctor for something that relieves nerve pain.  If he/she is not comfortable, then request a referral to a pain management doc or clinc.  They will be.

Sorry, guys, this is almost all I know about treating nerve pain or paresthesias.  No, it IS all I know.  :((

Quix

[spastic]

I have been on the generic form of Neurontin called Gabapentin for a few years now.  I was prescribed this for symptoms similar to yours.  My main complaint was the walking in quick sand feeling and the color changes with it.  I now know it is called livedo reticularis and sometimes it is painful.

I think you would be a great candidate for this drug, I would just ask your neuro that you have heard great things about the drug and would like to see if it would help you with your symptoms.  It is not like your asking for a controlled drug like the percocet.  In fact he would probably prefer you to be on this kind of med.

I first started out with 100mg at bedtime and that dose didn't work and I have gradually built up to 800mg 3 times a day with no problems and no bothersome side effects.  It can make you sleepy and it can make you gain weight.  I have noticed that some Dr's have been kind of pushing Lyrica and it is similar but more expensive than gabapentin.  I don't think that you would have a hard time in getting prescribed this.

Good Luck Sweetie,

Ada